Old 02-11-2018, 03:34 PM #1 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Restarted Pimozide.

My husband decide to restart Pimozide nearly a month ago at the lowest dose. The side effects are still present (extreme fatigue, slurred speech, and excess saliva), however, at his last ALSFR appointment, he had not progressed at all. My husband is an extremely slow professor, but he has always progressed, just more slowly thank most thankfully. I'm not sure if it is just the Pimozide or a combination with Edaravone, which he is also on. We're quite happy with this news regardless.

While we both hate the side effects, of course him more so than me, he's going to push on through the trial and hope that the side effects dissipate soon. He doesn't want to give up as his life is being dangled in front of his eyes, if I can be so melodramatic. Who knows what the coming months will bring but the trial ends in May and it will be interesting to see where he is at that point.

Just thought I'd give an update.

J
Bestfriendstilltheend is offline  
The Following 4 Users Say Thank You to Bestfriendstilltheend For This Useful Post:
affected (02-11-2018), Kristina1 (02-19-2018), Scotiaspirit (04-02-2018), Tedstehr (02-18-2018)
Old 02-18-2018, 02:05 AM #2 (permalink)
Tedstehr's Avatar
Member
 
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 166
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Tedstehr Tedstehr is offline
Member
Tedstehr's Avatar
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 166
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Default Re: Restarted Pimozide.

Thanks for the update J. I am very interested to hear the results of that trial. I was going to volunteer for the CK trial at U of C but I think the seven trips will be too gruelling. MRI study in Vancouver it is.
Tedstehr is offline  
Old 03-11-2018, 10:07 AM #3 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Re: Restarted Pimozide.

Hubby stopped Pimozide again, waited 10 days and gave it a third and final try. It's been 8 days and he has no side effects this time. His doc had said that at such a low dose it was highly unusual for someone to get such bad side effects. I guess my husband was extra sensitive to it.

Anyway, my husband, for the first time since onset of symptoms, has had nearly zero progression. Just a slight weakening in his left leg, but none anywhere else. That's 6 months without progression, which is exciting. As well, he used to get quite bad stitches in his rib cage and he no longer gets those. They were quite painful for him so I'm glad these are gone.

His Neuro also said that he doesn't believe there will ever be a one pill cure to stop progression anytime soon, but it most likely will be a variety of treatments, such as what was found with HIV. He also believes that the combo of Edaravone, Riluzole and Pimozide have worked together to slow progression. We'll wait to see what the next 6 months brings and his next clinic visit. The trial ends at the end of May.

Thought I'd give another update.

Last edited by Bestfriendstilltheend : 03-11-2018 at 10:15 AM
Bestfriendstilltheend is offline  
The Following 3 Users Say Thank You to Bestfriendstilltheend For This Useful Post:
Idaho2790 (03-11-2018), ShiftKicker (03-11-2018), wishmobbing (04-05-2018)
Old 03-11-2018, 01:06 PM #4 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,675
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,675
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Restarted Pimozide.

Thank you for the update. I am so glad your husband's "cocktail" is now working in combo to slow/stop his progression- and that the Pimozide is helping instead of adding to his burden. That's wonderful news.
ShiftKicker is offline  
Thanks from
Bestfriendstilltheend (03-11-2018)
Old 03-12-2018, 12:39 AM #5 (permalink)
Tedstehr's Avatar
Member
 
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 166
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Tedstehr Tedstehr is offline
Member
Tedstehr's Avatar
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 166
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Default Re: Restarted Pimozide.

Wonderful news J! That is so great. I can’t help but think that upper motor and lower motor neuron disease variants will need different cures. Sounds like Pimozide could be the magic bullet for lower motor neuron. I hope to try it soon for upper motor neuron.

Regardless, the news doesn’t get much better!
Tedstehr is offline  
Thanks from
Bestfriendstilltheend (03-12-2018)
Old 03-12-2018, 12:40 AM #6 (permalink)
Tedstehr's Avatar
Member
 
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 166
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Tedstehr Tedstehr is offline
Member
Tedstehr's Avatar
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 166
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Default Re: Restarted Pimozide.

By the way, what was his final dosage?

Last edited by Tedstehr : 03-12-2018 at 12:51 AM
Tedstehr is offline  
Old 03-12-2018, 08:45 AM #7 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Re: Restarted Pimozide.

Hey Ted!

His final dose he takes is one 2 mg pill, taken in the morning. I believe the highest dosage for the trial is 4mg, so he's close to that dose.

We are quite happy, but so we don't lose are heads over this, we are taking this as a plateau for now and see what the coming months brings. I thought he'd be much happier with the clinic visit but he's been really, really down since then. I'm not sure why, I just try to be there for him.
Bestfriendstilltheend is offline  
Old 03-12-2018, 11:56 AM #8 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,675
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,675
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Restarted Pimozide.

BestFriend, is it possible your husband's mood has been affected by Pimozide? It's a listed side effect of the drug.
ShiftKicker is offline  
Old 03-12-2018, 02:21 PM #9 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Re: Restarted Pimozide.

Hi Fiona,

It is possible for sure. He did elude to the fact that he was frightened of the future, which of course is totally understandable. What I think might be the drive in the sudden change of feelings is his fear of hope. The doctor was super excited, there were others in the room watching my husband get his exam. It's a mind f**k if this goes south. Especially after all the initial stress of of the medication. That's the nature of clinical trials, though. So much hope for something that may not work.

All we can do is wait and try to look at everything from a pragmatic approach.
Bestfriendstilltheend is offline  
Thanks from
ShiftKicker (03-12-2018)
Old 03-17-2018, 08:07 AM #10 (permalink)
bmorato's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Sao Paulo
State: SP
Country: BRA
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 5
bmorato is on a distinguished road
bmorato bmorato is offline
New Member (Say Hi)
bmorato's Avatar
Join Date: 2018
City: Sao Paulo
State: SP
Country: BRA
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 5
bmorato is on a distinguished road
Default Re: Restarted Pimozide.

Hi Bestfriendstilltheend,

I am from Brazil and my father has been diagnosed with ALS 2 weeks ago.
I have read the article regarding the studies with pimozide and also your post about this trial with pimozide.

I have also shown the doctor the article of the studies with this medicine and he said that if he had this disease he would try the pimozide. So my father already started it 5 days ago with 1mg and so far no side effects. Next week we will change it to 2mg. Hope it works and at least stops the progression of the disease.

Please update us with the status of your husband treatment and I will do the same.

With best regards,

Bruno Morato
bmorato is offline  
Old 03-20-2018, 09:57 AM #11 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Re: Restarted Pimozide.

Hi Bruno.

I am so glad that your dad can get on the meds. Neurologist said that it would not be allowed to be distributed until trial is done. I guess that is not the case (which is good). I am also really glad that your dad has had no side effects.

A doctor from Harvard called my husband's neurologist a few weeks ago wanting to give Pimozide to his newly diagnosed friend. This Harvard doc seems positive about the Pimozide.

Lets both keep our fingers crossed for our PALS and all others on this clinical trial. I will keep you updated as I hope you will keep me updated.

Take care

Joanna
Bestfriendstilltheend is offline  
Old 03-20-2018, 11:32 PM #12 (permalink)
Tedstehr's Avatar
Member
 
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 166
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Tedstehr Tedstehr is offline
Member
Tedstehr's Avatar
Join Date: 2017
City: New Westminster
State: BC
Country: CA
Diagnosed: 08/2017
Interest: I have been diagnosed with ALS.
Posts: 166
Tedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the roughTedstehr is a jewel in the rough
Default Re: Restarted Pimozide.

Bruno,

That is indeed wonderful news! How fast word spreads in this community. If you need instructions to get Edaravone I would be happy to help through a private message.

We all hope for the magic bullet cure. But short term at least it is these incremental steps that will probably be the ultimate answer. And with every step like Pimozide researchers can understand the mechanisms needed to discover other cures.

J, please let W know how happy I am for his (your) triumph. Of course that happiness has selfish reasons too!
Tedstehr is offline  
Old 03-21-2018, 03:05 PM #13 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Re: Restarted Pimozide.

Hey Ted,

We are taking everything with a grain of salt for now. It's too early in the clinical trials to get excited. As well, Pimozide is an interesting drug. It has quite brutal side effects and may not be for everyone. As ShiftKicker's neuro says "It's like using a hammer for a light touch", or something to that effect. I'm sad to report that all the side effects came back after about the 10th day on the meds. As such, hubby has taken partial disability to see if he just needs to sleep off side effects, as he was working 12 hour days before and that was hugely contributing to his exhaustion. As well, the edaravone gave him the same side effects initially, but because he wasn't working, he could sleep whenever he wanted and by the third week, he was over the side effects and full of energy.

Anyway, this is the funny world of clinical trials I guess. It's a wait and see game...

Hope all is well with you and the fam.
Bestfriendstilltheend is offline  
Old 03-22-2018, 01:21 PM #14 (permalink)
bmorato's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Sao Paulo
State: SP
Country: BRA
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 5
bmorato is on a distinguished road
bmorato bmorato is offline
New Member (Say Hi)
bmorato's Avatar
Join Date: 2018
City: Sao Paulo
State: SP
Country: BRA
Diagnosed: 03/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 5
bmorato is on a distinguished road
Default Re: Restarted Pimozide.

Hi Bestfriendstilltheend,

Today he is completing 10 days taking Pimozide. On the second week he has switched from 1mg to 2mg. He has also started to take Riluzole.
Since the beginning, even before starting Pimozide, the disease is affecting more his breathing. Doctor said he is breathing with around 30% of the capacity from his lungs. This situation seems not have changed so far. I hope his lungs capacity can get improved at least a little bit. He also has some lack of appetite.
He is now starting to have extreme tiredness and this is disturbing him a lot at his job. I don't know wheter this is due to some progress of the disease or just a side effect of the pimozide. Hope it is just side effect and and goes away soon...
We will wait maybe some weeks more and depending on the side effects we will try to switch to 4mg.
As you said, let's cross our fingers and be confident that we are on the right direction.

Thanks,

Bruno
bmorato is offline  
Old 03-23-2018, 05:31 AM #15 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 349
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Re: Restarted Pimozide.

Hi Bruno,

I'm sorry your dad is now feeling tired. My husband's neuro was quite adamant that this drug is not on open label for anything outside of what it was originally intended for. The human sample in clinical trial one was too small to see all long term effects.

I was honestly quite surprised that your neuro readily prescribed at as we are only just beginning of phase two trials here in Canada. My husband will not go above 2 mg as the side effects were really, really bad for him when he tried 4 mg. I do hope that your dad's neuro at least contacts one of the trial centres here in Canada (there are 6) to at least get some feed back from one of the experimenters as to what he should look for when your dad is on the medication.

I hope your dad feels better soon if the exhaustion is caused by the Pimozide. If it is, 4 mg will really be hard on your dad. Again, my husband had to stop the 4 mg because it was way too strong. Please see my older post about my husband's side effects from the Pimozide. It wasn't pretty and my husband had poor quality of life when he was on the 4.

Please continue to update as I will as well.

Take care, Bruno
Bestfriendstilltheend is offline  
Closed Thread

Tags
early, edaravone, fatigue, hope, life, professor, saliva, slurred speech, speech, trial, update


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Pimozide Bestfriendstilltheend ALS Drug Trials 13 01-09-2018 12:19 PM
New article on Pimozide laurel ALS Research News 0 01-05-2018 12:07 AM
Pimozide LeprechaunSean ALS Drug Trials 16 08-14-2015 02:08 PM


All times are GMT -5. The time now is 05:52 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016